Boy kicked out of school because he has gene for cystic fibrosis

A California boy has been ordered to transfer to another middle school because he carries the gene for cystic fibrosis, even though he doesn't actually have the incurable, life-threatening and non-infectious disease. His parents have gone to court to fight the move.

Their son, 11-year-old Colman Chadam, was told last week that he’d have to transfer from Jordan Middle School in Palo Alto, Calif., to a school three miles away because he posed a risk to another student at school who does have the disease, according to TODAY.

“I was sad but at the same time I was mad because I understood that I hadn’t done anything wrong,” Colman told TODAY. He added: “It feels like I’m being bullied in a way that is not right.”

An inherited condition, cystic fibrosis causes the body to create a thick mucus that clogs the lungs and can lead to life-threatening lung infections. About 30,000 American adults and children have the disease and patients have an average life expectancy in the late 30s.

While it is not contagious, doctors say people with cystic fibrosis can pose a danger to each other through bacterial cross-contamination if they are in close contact.

“In general, we would prefer that there not be more than one cystic fibrosis patient in a school,” Dr. Thomas Keens, the head of the cystic fibrosis center at Children’s Hospital Los Angeles, told TODAY.

The district’s assistant superintendent, Charles Young, told NBC News that officials relied on medical authorities who said “a literal physical distance must be maintained” between patients and that the "zero risk option" was to transfer Colman.

But Colman’s parents, who are home-schooling him while they await a court hearing next week, say the school is overreacting.

“Why take a child who’s new to the district, who’s just making friends, who’s just building a support network, who’s just getting to know his teachers, who’s been well his whole life ... why stigmatize him?” his father, Jaimy Chadam, said on TODAY.

Jennifer Chadam said her son has attended two other schools with students who have cystic fibrosis. “It has never been an issue. Ever,” she said.

Colman has not suffered from lung problems, never needed treatment and had a negative result on a sweat test, the most accurate test for the disease, his parents told the Chronicle last week. They told the paper their son has never had a clinical diagnosis of cystic fibrosis.

“The school district freaked out," Jennifer Chadam told the paper.

TODAY’s Star Jones, a former prosecutor, and Dr. Nancy Snyderman, NBC’s chief medical editor, said the district erred in transferring Colman.

Snyderman said Colman is not at risk for developing the disease, and said a student with the genetic marker for cystic fibrosis should not pose a health risk.

“The idea behind segregating these kids is that you don’t want them to get secondary infections because they have problems with their lungs and with their guts,” Snyderman told Savannah Guthrie on TODAY Wednesday. “They are more at risk for infections but I just want to underscore he doesn’t have cystic fibrosis so this was in an ill-thought-out decision.”

Jones said a school district cannot unilaterally transfer a student without due process, and said the school was probably acting to head off a possible lawsuit if anything happened to the student who does have cystic fibrosis.

“It’s a pre-emptive strike,” Jones said. “They don’t want to exacerbate this child’s death by one extra day.”

She said the school can’t have it both ways with Colman. “You cannot deny his ability to be in the school without due process and then not use due process pretending that he has this disease,” she said.

Snyderman said that while the Chadams never could have anticipated that their disclosure would have led to a transfer, she said their case is reminder to parents that the information they provide on forms will be scrutinized.

“Everything you put down on any one of those nursing or doctor forms, man oh man, can it come back to bite you,” she said.